“Polio survivor” learned to live with pain and other serious illnesses – 10/18/2020

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Retired English teacher Cheilamar Prates has had to deal with a range of illnesses since she was born. At the age of two, she was diagnosed with acute anterior polio. As an adult, she had post-polio syndrome and at 67, breast cancer and, months later, discovered herpes zoster in the sick breast.

Despite all the challenges, he never felt inferior and made adversity a chance to grow and also help those in the same situation. Next, she tells her story:

“I was diagnosed with acute previous polio at the age of two. My parents, Elcy and Celina, realized that I had trouble walking and took me to a doctor. They never treated me like a sick child and always encouraged me to be independent, have no complex and do everything that others did.

This was essential to overcome the consequences of polio, which in my case affected the movement of the right leg. At no time did I feel different from my sisters. He rode the same bicycle as them and without adaptations. My husband Júlio says that when he was 12 and I was 7, I ran over him. Earring that was our first meeting. We started dating when I was 16 and he was 21. We went to the dance and danced with my dad, my boyfriend and friends. When I got married, I made a point of wearing high heels, even limping.

I led a normal life. I had two children, who gave me seven grandchildren and a great-grandchild. I went to college at UFRJ (Federal University of Rio de Janeiro), became a teacher, took a master’s degree in education and, when I retired, from the classes I taught at UFRJ in 1997, I continued teaching as a public service exam until 2011. Between retirement and another, I studied law, learned to play the piano and to paint. I don’t like being still.

In 2000, I became hypertensive and started to feel pain and a lot of flaccidity in my right foot. Over time, I discovered that these symptoms were due to post-polio syndrome, still little known at that time.

Image: Personal archive

This new disease started to limit my movements and, from 2006, I started using gutters, crutches and taking human immunoglobin to endure the pain. Finally, in 2013, I started using a motorized wheelchair to get around.

But I did not give up walking again normally and, through researchers from UFF (Universidade Federal Fluminense), I underwent arthrodesis surgery, which uses stem cells, and recovered my balance and the musculature and strength in my right leg.

The only thing I can’t do is move that foot down, because of a titanium rod that has become part of me. For this to be possible, I had to spend a year and three months in isolation at home to recover. Earring that was a training for the quarantine that we are living because of the pandemic of covid-19.

After participating in a third research on post-polio syndrome at UFF, I discovered that it could help more people who are in the same situation as me. It was 2016 and together with three other friends I created the group Polio Voices, which currently brings together about 150 people, almost all from Rio.

For me, they are my polio-friends. For four years now, we have managed to organize ourselves as an association, and in 2018, we founded a group within the Lions Club, which has supported us in the quest to improve the quality of life of people with polio and post-polio syndrome.

We help from the purchase of suitable wheelchairs to medical and legal support, such as having access to the LOAS benefit, intended for people with some type of disability.

The discovery of breast cancer and more sequels

In December 2019, I did some routine exams and received yet another challenge: breast cancer. It was a small lump on the right side, but I had to go through radio and chemotherapy sessions and continue on complementary treatment until 2024.

Months later, in May 2020, I was struck by herpes zoster, a bacterium that lodged in the sick breast. At 68, I started to feel pains that I had never felt before and still accompany me today, although the intensity today is much less. Although she is under control, I have some consequences and to remove the problem for good, I intend to have surgery at the end of the pandemic.

I tried not to fade again and remembered my parents’ advice, that is, to act with will, determination and confidence in my aspirations, and not to shirk my responsibilities in times of adversity.

Cheilamar Prates had polio, breast cancer and herpes zoster - Personal archive - Personal archive
Image: Personal archive

My family has always supported me unconditionally and gives me a lot of strength. I am currently in the group, via the internet, and also at home. Being active makes me keep my chronic pain in check.

I say that I am a polio survivor and that being alive makes me thankful and able to fight for those who suffer from this disease and need some kind of help, be it in the treatment, which is expensive and long, financial and, mainly, emotional. We need to get over our pains and sequels “.

What is acute anterior polio and post-polio syndrome?

Acute anterior polio occurs when the wild polio virus invades the central nervous system and targets and kills lower motor neurons in the spinal cord, causing motor problems. Post-polio syndrome can be developed by up to 70% of those diagnosed with the first disease. This syndrome usually manifests itself with a minimum window of 15 years after the diagnosis of acute anterior polio, and can cause a series of ailments, such as joint pain, muscle fatigue, cold intolerance and depression.

Since 1960, acute anterior polio is a disease considered to be eradicated and the only prevention is vaccination against the virus. For those who were diagnosed before complete eradication and started to suffer from post-polio syndrome, treatment varies according to the symptoms presented by each patient, such as pain, fatigue and insomnia.

What is herpes zoster?

It is a disease caused by the same chicken pox virus. It lodges near the dorsal cord and does not cause symptoms initially. But when there is a drop in immunity, as in the case of cancer, it can be activated and cause nerve damage. This lesion can cause microinfarctions of the nerve, either temporarily (up to 120 days) or permanently. The main symptom of herpes zoster is a burning sensation, in addition to itching and a stinging or needling in the diseased region.

The most indicated treatments are the use of antidepressant remedies, as they work as analgesics for this specific type of pain, anticonvulsant remedies, lidocaine-based anesthetics and in more severe cases, morphine-based analgesics. If the patient does not respond to any of the traditional treatments, an intervention procedure is recommended to block the pain caused by herpes zoster.

Sources: Marco Orsini, PhD in neurology at UFRJ and deputy coordinator of the Department of Neurology of the Fluminense Medical Association and Paulo Renato da Fonseca, specialist in pain clinic and anesthesiologist at Unifesp (Federal University of São Paulo) and president of SBED (Brazilian Society for the Study of Pain).

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